BCG and PSA?

Hi Alex, 

Thanks for such a detailed and helpful reply. 

My partner is supposed to be having 15 BCG treatments which I think is the new normal - he has coped well so far and his bladder was completely normal when he had his last flexible cystoscopy which is encouraging. I think he will be able to get to 15 if this is offered. 27 sounds a lot and very sorry to hear you've been left with chronic pain. My partner also has a limited bladder capacity - always planning where he can go to the loo!

I think part of the poor communication has been due to Covid - he has only had two face to face consultations and that was to have a quick pre TURBT meeting. He was given the cancer diagnosis on the phone and also the likely prostate cancer news on the phone - quick call, no explanation or cause for optimism. The doctor said he thought it was prostate cancer and then went quiet, so to fill the awkward silence, my partner said 'so that's bad news' and he replied 'yes, that's bad news'. I always thought that with a cancer diagnosis there would be more thought given to the psychological impact of giving this type of news. I think people deserve a face to face meeting and a chance to talk and ask questions. I do wonder if he should ask to change consultant as this doctor is known for his directness (bluntness). I saw the Cancer Research advert where the man is given his diagnosis of prostate cancer and is comforted by the doctor - I find it a bit upsetting to watch as in my experience, discussions about cancer diagnoses are nothing like this!

Anyway, you've given me a bit of hope that the biopsy may be negative and if not, that it may not be as bad as it sounds. It is all so stressful - I hope you continue to do well with the bladder cancer and that the PSA is not anything to worry about. It seems so unfair to have to deal with anything else on top of bladder cancer. 

We’ve all seen the films where a doctor gently and sympathetically breaks the news to a patient that they’ve got cancer. The reality in my experience couldn’t be more different. I’m not sure the word cancer was even mentioned in my meeting to get the news from a doctor - who I’d never met before and hardly looked up from his screen. I wasn’t given the chance to bring my wife. When I got home I had no idea what to tell her or my children. 

I can understand how upsetting it must have been for you. I know my wife has found the whole process upsetting and frustrating. 

I hope your partner is ok and doesn’t have prostate cancer or if he does it’s the type that doesn’t need any treatment. 

Keep us posted. 
Cheers

Alex

Hi Alex,

My partner had his prostate biopsy yesterday - not pleasant (he joked that under any other circumstances he would have reported the doctor to the police) but very relieved it has been done. He seemed to take a lot of samples which I guess is good in terms of not missing anything and hopefully reducing the chance that it will have to be repeated.

One positive thing to report is that the consultant said is that it may not be cancer and importantly he confirmed that BCG treatment does cause inflammation / changes which look suspicious and it also makes PSA unreliable as a predictive test so hopefully that is something to hold on to for you and us. The consultant knows that I am annoyed about the way things have been communicated and he did talk to my partner in a more supportive way, saying if it is cancer then we will sort it. 

I am very saddened to hear how your news was given to you - it's just so unnecessary and could easily be done in a much more supportive way. I naively thought perhaps someone would make a follow up phone call (perhaps a nurse) to see how my partner was and if he had any questions after the bladder cancer bombshell but you are on your own with this it seems. My partner did say that he was not impressed to be rung at work with the prostate news and the consultant said, well you need to be at home for these calls which is fair enough, but he only booked the call mid morning for the same day when my partner was already out at work and a long way from home. Anyway, he felt that communication was better yesterday (his consultant did the biopsy) so hopefully that will improve going forward. 

I do feel for your wife - I have a phobia of NHS franked letters now....I guess with Covid, there has been no opportunity for partners to go to appointments (or even patients in many cases) which has made things worse. I hope that this improves quickly now that the pandemic is not such an issue. 

Best Wishes  

Fingers crossed for your partner catfan. Did the consultant indicate when you would know more? I have found it usually takes a couple of weeks to get biopsy results so hope you will both feel able to push it to the back of your mind and seek out some pleasant distractions. My cake consumption increases when I'm waiting on results. Sending best wishes. x

Good to hear that your partner’s now had his biopsies. They are not very comfortable. I agree with his reaction! It’s good they’ve taken quite a few biopsies too. With me they only took targeted biopsies, which was a bit frustrating as it leaves me wondering if they missed something - especially with a rising PSA  

Thank you for passing on the consultant’s comments that inflammatory and BCG induced changes can look suspicious. That is reassuring and makes sense. 

it sounds like your consultant now understands that he needs to be more communicative. It surprises me that these experienced doctors still don’t know how to interact with us humans but as long as they are good doctors I suppose!

Best of luck with the biopsies. I agree with Herothedog about the anxious wait. I’ll try cake next time

Hi Herothedog,

Thanks for your message. The letter says it will take 3-4 weeks for the results which seems a long time! I guess they will need to have a meeting to discuss what to do about his treatment. He is due to have his 13,14 ancc15th BCG in March but obviously that ic now in doubt.

I go through phases of comfort eating (love cake) and feeling too anxious to eat when we are waiting for important news. At the moment, I don't feel too bad bit in will build up when we get an appointment letter. However much you prepare yourself  things still shock and upset you x

Hi caftan, does your partner have an identified Clinical Nurse Specialist? I was introduced to mine at the consultant's appointment after my first TURBT when they told me stage and grade of the cancer found. She has been brilliant. I have had 4 reoccurrences since then, biopsies seem to come through for the team after a week and since I know which day the weekly Urology team meetings are, I can phone my CNS after that and she gives me the biopsy result and feeds back the team's recommended treatment option. Saves me driving 40 mile round trip. I haven't actually had an appointment with a consultant other than in operating theatre or at a flexi since October 2017! Incidentally despite 4 reoccurrences (roughly one each year since diagnosis) my team agreed to continue with my BCG because tumours were lower grade than my initial one. I shall be holding my breath next month when my flexi is due. Fingers well crossed for you both. x

Hi Herothedog,

My partner had a bit of a bad start to BCG because he had the first TURBT at one hospital and was then referred to another for the second. They didn't think he would be suitable for BCG but the biopsy results were better than expected and he had a bit of a rushed transfer back to the first hospital and no introduction to the nursing team. Things have improved since then and they have rung him a couple of times and we got his rigid cystoscopy results from them via email when I chased them up. The senior nurse is lovely as is the nurse that I think has been allocated to my partner. He would rather not speak to the consultant but because things have been a bit unpredictable, he has had 3 phone meetings and 2 face to face. It's interesting to hear how other people have got on with BCG - it's good to hear that your recurrences haven't been as serious. Wishing you a good outcome for your next flexi x 

We had the dreaded appointment letter today for a phone consultation next Wednesday. It's a bit strange as the doctor named is not one my partner has seen before and not his consultant. His name isn't even on the urology team list which is a bit concerning although it also says 'or a member of the urology team'.

Not sure what to think really - there was a discussion that they would do a face to face appointment if it was bad news but I guess this could easily have been forgotten. 

I guess I am thinking that if the biopsy was negative, they would just gave written a letter but perhaps not if the findings mean he can't have more BCG treatment (if it has caused inflammation). 

Probably pointless trying to work out what they are going to say - I am just tormenting myself. 

It’s so difficult waiting for news and totally understandable that you’re trying to work out what it all might mean.

Could it be that the new person is a prostate rather than bladder specialist? I was seen by a different team when I had my prostate biopsies. 

Fingers crossed and thinking of you both. 

As an amusing aside, I saw (yet another) urologist today and might be given Botox to help with my ridiculously overactive bladder after finishing BCG. Trying something called Ialuril first.

Best of luck on Wednesday and let us know.